Tag Archives: mouth

My Mouthful 

The way I envisaged my Graft Versus Host Disease to materialise is, surprise, surprise, not the way it has actually presented itself. I imagined and hoped for weight loss inducing bowel movements and feared organ failure. Not once in all the scenarios I fretted over for I don’t know how many months, did I consider the possibility that my mouth would be the unlucky cavity awarded the honour of being infected (if that is the correct terminology) with GVHD. Not once. Nor did I realise when the first ulcer appeared, just how annoying having a painful mouth can become.

Do you know what I have learnt since my mouth turned beige? Throughout the course of a day, I use my mouth a lot. A hell of a lot. 

My cheeks are swollen, my tongue is raw and my breath is lethal. Food collects in significant lumps in the corner of my mouth, requiring a rinse or five every time I eat. Gone is my ability to swallow 10 pills in one go and going is my ability to have a gulp of water without getting half of it down my top. In, is a gentle dribble from the right hand side of my mouth and cracked lips. Delicate flavours are currently lost on me and my beloved  English Breakfast Tea now tastes like soil. I am told by the Medically Trained People that this is all very common, as is an inability to take anything hot and an extreme, almost comical aversion to chilli. 

To top all of that off, it is just plain old ugly. 

   
 
It has been over four weeks since my mouth was inspected by somebody other than myself, and I have been put on a frice daily cocktail of three mouthwashes. Yes, three mouth washes, each to be done four times a day. Even for somebody who spends as much time indoors as I, this is a difficult regimen to adhere to. The mouthwashes forming the triple cocktail are called Doxycycline (an antibiotic) Betamethasone (a steroid) and Nystan (a milky substance that tastes like a hangover). They are absolutely revolting. They taint everything. One day, I had to gobble a packet of Crispy Bacon Wheat Crunches as a palate cleanser. I suspect there are healthier options. 
For the first two weeks, I meticulously did each mouth wash making sure I swirled the Doxycycline and Betamethasone for two to three minutes each. Over the course of the day the whole thing took just under an hour. An hour! Who has an hour for oral hygiene? At my follow up  clinic appointment 18 days after I was prescribed the drugs, I was informed that it was called a ‘triple cocktail’ for a reason, meaning the drugs could be mixed together. Brilliant. A great time saver, but one that tastes rancid. Not only do they taste like something one might bring up on a morning after the night before, they also look like it. 

 Appetising 

As is clearly evident, I complain about my mouth all day every day. My intellect has led me to believe that this is because I use my mouth all day every day. It is also something new. I have experienced many a horrible thing on My Myeloma journey, but this GVHD malarkey that has manifested itself in what is essentially oral thrush, is the most irritating. It’s not a broken bone, it has not caused severe mobility issues, it’s not fatigue and it is not an incurable cancer. It’s trivial.

I know it is not actually trivial. The mechanism of GVHD with its very fine line between good and evil is a science that goes far above my head. It is also a lottery, and so far, it looks like I got the bonus ball. I wanted this necessary evil, I guess, just like everything else it is going to take some adjustment. 

👅👅👅

EJB x

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Potty Mouth

For two days, anything entering my mouth has had to encounter what feels like a layer of sandy cling film covering my tongue and cheeks. That, apparently is a common side effect of the the Melphalan and it is a reason why I had to eat all of those ice lollies and pour green poison into my mouth four times a day. Despite the precautions, I was surprised this morning to discover, whilst I was looking at myself in the lift mirror, that my tongue, looks like this;

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Tin Mouth

Approximately one hour ago, a treat I get at this point in every cycle started. It is called ‘Tin Mouth’. I will have mentioned this before. I believe this side effect, in the short term to be the second worst thing about my treatment. Maybe joint second with the constipation now I have discovered the jellied bullets. If we look at the long term, the whole hair issue and babies gets thrown in, and those side effects are bad. Bad.You do not have to be a genius to work out what ‘Tin Mouth’ is, but I felt the need to enlighten you anyway, mostly because I am working up the energy to put my pyjamas on and need to fill the time…

Everything that goes into my mouth, and just the being that is my mouth tastes like tin. And tin I will taste for the next six days.

The End.

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